MTHFR: I have two SNOS on two parts... - Pernicious Anaemi...

Pernicious Anaemia Society

33,194 members24,445 posts

MTHFR

KEFNB profile image
18 Replies

I have two SNOS on two parts of the MTHFR gene. I alway have ordered methyl B12 injections knowing I had this methylation issue. What I couldn’t understand is why I needed three injections a week of methyl B12 to have enough energy to get through the day. Recently, I came across an article on TMG , also known as Betaine Anhydrous. Body builders and athletes seem to use it for faster recovery from workouts. In that article, they talked about it being a great methyl donor. I decided to try it because MYHFR is a methylation issue. Oh my goodness! I started forgetting to take my Methyl B12 injection. I’m down to once every two weeks and expect I will be able to continue to reduce the frequency. ( For reference, I’ve been taking injections 3X a week for approximately four years! I could not reduce it until I started the TMG supplementation.

It’s inexpensive and I’ve bought it on Amazon, Bulk Supplements powder. Here is how I’ve taken it:

Start with 3,000 mg= 1 teaspoon first week

Then: 3/4 tsp. For 2 weeks

Then 1/2 tsp. + 1/8 tsp.

( my notes say you may be able to maintain as low as 1/4 tsp per day.

I am taking 1/2 tsp. Per day currently and have not attempted to reduce.

I hope this helps someone else.

Written by
KEFNB profile image
KEFNB
To view profiles and participate in discussions please or .
Read more about...
18 Replies
JesusMercy60 profile image
JesusMercy60

oh my goodness thats great I'll have to look into this, I have the mthfr for folate methylation gene, I'll have to read up on this product. I wonder what it does.

KEFNB profile image
KEFNB in reply toJesusMercy60

It’s a methyl donor, as I understand it. I think I needed the B12 injections as frequently as I did, because my body was using it partly as a methyl donor. I was scrolling one day and saw something about it being a methyl donor and a light went on. Maybe that’s why i need Ed such a high frequency for so many years. Someone here mentioned Nicotinamide and NAD. Neither made a difference for me. This is an inexpensive supplement to try. I would buy a small bag of the powder from Bulk Supplements and proceed with the sequence I described in my original post.

I hope it helps if you try it

JesusMercy60 profile image
JesusMercy60 in reply toKEFNB

well I may try this then, yes I had an answer to my prayers with a methyl folate that agrees with my stomach , I have PA and 8 months into injections everyday, is this a safe suppliment for long term I wonder, I hope so as it will be great to have.

lb9999 profile image
lb9999

Very interesting! I took TMG for a couple of years in effort to bring my homocysteine down, to no avail. I will start taking it again to see if it can help me utilize my B12 better. Thank you for sharing!

wedgewood profile image
wedgewood

Thank you KEFNB. It’s just great to get this information.

Maldeerum profile image
Maldeerum

Thank you for sharing this. I’ll look into it as I have similar difficulties.

WIZARD6787 profile image
WIZARD6787

Good on you!

I took Betaine HCL TMG and then discovered that for me NAD was more effective and then that B3 in the form of Niacinamide was even more effective.

From memory I took 1.5 g of Betaine 5 to 6 times a day as I had found less to make no difference.

I tested negative for the MFTR but the test was developed by the local hospital and may not be as dependable as the established genetic testing companies.

I have found Methyl to be much more effective although for me it does not cause 'anxiety' rather it heals my neurological system and I can now process trauma in a way that was not possible before. Hard work that!

Oneash profile image
Oneash

Where did you get your gene testing done? I started looking, but got bamboozled. This TMG certainly is worth a try.

prillyb12 profile image
prillyb12 in reply toOneash

I had done 23andMe dna testing some years ago. One of my doctors said I should download/upload? the raw date to geneticgenie.org and ask for a methylation profile, I also did a detox profile. At the time there was no charge. Then I studied up on the results. There is a lot of youtube. I started on TMG with great results. But I should experiment with increasing my dose, which I call tri methyl glycine. Can anyone answer this: I'm finding I need to take betaine Hcl in the middle of the night. Is this related to the betaine anhydrous?

JesusMercy60 profile image
JesusMercy60

Hello Kefnb,

well thank you for your post, I prayed and purchased this from life extension on amazon in powder form and tried today, I was going to ask you how you are still feeling with this suppliment? I only took 1/4 tsp just to try to see how I feel I'm only in my 9th month of daily injections so I felt a little more nerves waking up and that may be normal. also if I may ask in the beginning of your treatment did you have nerves that were waking up or reversing out? thank you for any more information on how its been helping you.

KEFNB profile image
KEFNB in reply toJesusMercy60

Hi JesusMeecy60,

I’m not sure that my experience is going to be very helpful to you unless you have had testing showing that you have a genetic defect on the MTHFR Gene. I had my testing done by a doctor who said that people who have low B12 often have SNPS ( pronounced snips) on the MTHFR Gene. I’m no expert, but my understanding is that there are quite a number of these genes and two have had quite a bit of study. I have one defect on each of those genes. One from my mom and one from my dad.

MTHFR is all about “ methylation which is a common biochemical process that might be the most important process in our biochemistry. It seems most every process in our bodies requires methylation ( adding methyl to something).

I was using methyl B12 because I felt much better on that than on either of the other two injectable forms. I injected three times a week for about four years I think. I couldn’t go below that, as I would be exhausted-needing two to three hour naps and willing myself out of them as if I was willing myself from a coma.

Thinking about why I was unable to reduce my injection frequency, it occurred to me that maybe my body was using the methyl in the B12 as what is called a methyl donor. That is a molecule that has extra methyl on it and can sacrifice it for methylation in the various processes that require methylation. I had tried all the usual supplements, NAD, methyl B’s etc that are suggested for people with the MTHFR gene defect. None of them helped. I even started wondering if the MTHFR thing was just hype , when I read that TMG is a great methyl donor, I put the obvious together and decided to try it

I still only take 1/2 a teaspoon and I can go almost a month without the fatigue I always suffered prior to frequent B12 injections. While writing this, I’m considering increasing that dose to see if I can successfully go a full month between injections.

As for nerves regenerating and symptoms associated with that., I think it all happened when I was taking the injections three times per week and for me, the symptoms were tingling and numbness in my fingers and toes and generalized muscle soreness especially on the backs of my arms. All of that just seemed to improve gradually rather than hurt in any way as they were repairing.

For reference on the high end, if I remember correctly, body builders who use it because they recover faster from hard workouts use as much as three teaspoons.

I think there are many people on this site who are much better versed on B12, nerve regeneration and MTHFR than me. I hope they see your post and chime in.

I can assure you that you are in the right place. This site is far and away the most informative and the moderators are outstanding. You will find all the advice you need, especially from them.

If you don’t have an MTHFR defect, I don’t think you will need the TMG but, I doubt it would be harmful, especially in the lower dose range.

God Bless

Kit

JesusMercy60 profile image
JesusMercy60 in reply toKEFNB

good morning Kit,

well thank you for your reply it did help explain the methyl and b12. yes I did have blood work done by a Dr. hemotologist and I do have the mthfr gene mutation the two you explained you have. I was really bad for the last eight years dr.s could not find out what was wrong with me nerves were so painfull and weight loss was getting worse. I was finally bed bound last year and 86 lbs . so any treatment was so hard to handle on my body any vitamins just made my brain and body go crazy. I'm way better now.I inject 3 times a day and just 2 months ago started to use methy b12 tablets and methyl folate and that has help a lot to get through the day. the methyl earlier in treatment was way to strong for me but through prayer Jesus led me to the tablets that agreed with my system. so when I read your post I started asking Jesus well do I need this as well to get stronger and make my b12 work better. I also read from our friend WWWdot here on the forum on her methylation and methyl suplements . well for now I have to use this very gradually the tmg to see how my body reacts. I know we are all different. I use cyano to inject, it was easy to get and it did not cause me anxiety like the methyl b12 I was injecting but maybe now with the tablets and the tmg my b12 will work better. yes I have a lot of questions on how the tmg helps the b12 work better and I have them in my prayers to Jesus. any more information you have will help.

JesusMercy60 profile image
JesusMercy60 in reply toKEFNB

hello Kit,

I do have one question I was wondering how does the tmg work to where we will need less injections? I have that in my prayers as well. I find that a miracle. and I'm still only in my 9th month of injections and I was having neuro issues for 7 1/2 years that I know of. how long were you deficient that you know of. and what were you like at around 9 months.

KEFNB profile image
KEFNB

Oh My Lord you have suffered so much! I’m so sorry to read your story. Thank God you were finally diagnosed. It’s amazing to me how long it takes for doctors to figure it out. Since methylation is part of the process of building and maintaining the myelin sheath, no doubt we who are MTHFR need the extra help.

I did not suffer nearly what you have. I went undiagnosed I think, because all the sublingual B12 I was taking was showing up in my regular blood tests so docs eliminated that as a cause for my issues. It wasn’t until I ran out and didn’t reorder because I was spending so much money on a pleather of supplements and still was exhausted that my blood work showed low B12. It’s very strange that my blood work would show my B12 over 2000, but my RBCs were 107, a Cardinal sign of pernicious anemia and no one did any further testing.

Thank God for this site! It gave me the tools and information I needed to get myself well.

Keep the faith and keep looking forward! Our Lord must have some very special plans for you as you recover.

JesusMercy60 profile image
JesusMercy60 in reply toKEFNB

yes He brought me to this site too. I had given up in bed to him and just gave all my pain and suffering to offer to souls that needed to be let to Him, then the person who was bringing me Holy Communion to me in bed mentioned to me to look up my blood work that I had done 4 years ago, I said no I've already looked at it. well that nite laying in bed I looked and there was the gene mutations so I googled them and then I told my grown children and they looked them up too and said Mom you may need methyl folate and b12, so that was my diagnosis for the b12 folate and genes, only Jesus brought that to me in Holy Communion. then I had the dr. look up intrinsic factor and it was positive. so yes He has more planned for me. but I keep offering up to Him all the suffering I've been going through and I 'm asking Him what more does He have for me. I know we won't be here as I'm feeling His time is soon in coming so Im trying to do all I can to offer for Souls in need while I'm still alive. well He had you post your post for me I know that. so thank you Kit!

KEFNB profile image
KEFNB

You are doing God’s work even in your suffering offering it up so generously. How are you doing now? Has there been any improvement since you began your journey with B12?

JesusMercy60 profile image
JesusMercy60 in reply toKEFNB

oh yes, I can go out every morning to Mass at the Church , go to the store's , but my energy is very limited. I'm 61 with grandkids and I can't be with them as much as I would like, I have to lay down a lot still. but in the early months I was way worse and full of anxiety and mind just could not handle anything. but it has been slow and learning and praying. I'm still healing a lot but still way better. I think these new suppliments are going to heal as well that I'm am being provided with from Him.

JesusMercy60 profile image
JesusMercy60

hello Kit, I was just going to ask how you felt when you first took the tmg like the first week or so then also how long did it take until you felt like you were able to start feeling like reducing your injections . this is my first week with the tmg. I have to take small amounts with my meals . but I for sure feels stronger and able to go and do tasks feeling more stable . and also how you feel now and how long has it been since you started the tmg.

thank you Rosina

Not what you're looking for?

You may also like...

MTHFR treatment

Hi all, i know you are not all doctors, but to be honest here in the UK the doctors don't have a...
br74649 profile image

MTHFR / Methylation Pathways Testing & B12 Query

Hi All Firstly thanks again to everyone who kindly took the time to respond with help and advice...

MTHFR gene Over/Undermethylation

Hi Everyone, I had a follow-up interview with the GP (not in Canada) who says he doesn't see any...
terrybraden profile image

B12/MTHFR

my wife is poorly having all symptoms of B12 deficiency. Unfortunately GP is not helpful, she seems...
45hillbilly profile image

Different Types of Methyl B12?

I have had PA for years and have been able to control it with Methyl injections.  The Federal Drug...
toddn661 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.